Monday, February 23, 2015


Fiona is scheduled to get her first dose of pentamidine on March 1st. I'm a little worried, but feel better that it's scheduled. I talked to our care coordinator this morning and have a better understanding of the process. It will take about 2 hours to give her the IV. The biggest risk is increased heart rate. If her heart rate increases they would stop the IV and restart it at a slower rate. They will also premedicate her. I'm not sure what the premeds are yet.

I should have Fiona's latest labs today or tomorrow. I'm really curious to see what her lymphocyte levels are now that she hasn't had a virus in over a month. Hopefully they're higher. We go back to Cincinnati on April 1st.

We hit our $8,000 out of pocket this month. I think we will be able to use $3,499 of the copay assistance Hizentra offers. Now we wait to get the medical bills. If the website is right we will need to pay just over $4,000 in medical bills. Thanks to generous donations we were able to pay off last year's bills, and have a start on this year. Fiona's medical fund has helped so much!

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